No Greater Love

Tonight we met some friends in Nampa for the No Greater Love play.  It was a great play and it was so amazing to watch Kennedy know and understand the story of Jesus.  Before each part of the play she would tell Kevin and me what was going to happen.  I am so lucky to have both of my daughter's know  that Jesus died for our sins.  This is just what I needed tonight.

Starting to come off the Prednisone

Good news today.  Kennedy has gone three days without any diarrhea so we can now try to taper her off the Prednisone. YEAH! Today we decreased her dose by half and will try this for a week. If she continues to feel good we will be off the Prednisone in 2 weeks.

Gluten Free Samoas

This recipe was adapted from Baking Bites.  This year when the Girls Scouts came around we couldn't buy any because they aren't gluten free.  When I saw this recipe we were so excited to have Samoas again.

For the cookies you'll need....
1 cup butter, softened
½ cup sugar
2 cups all purpose gluten free flour (I used Bobs Red Mill)
1 tsp. baking powder½ tsp salt
½ tsp vanilla extract
up to 2 tbsp milk
- In a large mixing bowl, cream together butter and sugar.

- Mix in flour, baking powder, and salt at a low speed.

- Add vanilla extract and milk, adding milk as needed to make the dough come together in a nice thick texture, not too sticky.

Refrigerate for a few hours or overnight. (I left mine in overnight)

Preheat oven to 350 degrees.

- Either scoop tablespoons of dough, roll into a ball, and flatten, or roll the dough out between floured (gluten free, of course!) wax paper to about ¼ inch thickness.

- Use round cookie cutters to make small circles and use a knife of wide straw to cut a smaller center hole. (Or if you're like me, you can skip this part and just make them whole.)

- Place on a parchment or foil lined cookie sheet and bake for 12-15 minutes or until the bottoms are lightly browned and cookies are set. (Keep checking on them, mine actually needed to cook for about 20-25 minutes. It's best to start with 15 and keep adding time as needed)

- Cool for a few minutes on the baking sheet and transfer to a wire rack to cool completely as you make your oh-so-delicious topping!

For the topping, you'll need...

3 cups shredded coconut (sweetened or unsweetened)

12-oz chewy caramels (I used the bag of Kraft caramels)

3 tbsp milk

8 oz. dark or semisweet chocolate (I used the Ghirardelli 60% Cacao Bittersweet Chocolate Chips)

This part is time consuming, so hang in there...trust me, it's worth it.

Preheat oven to 300 degrees.

- Spread coconut evenly on a parchment or foil lined baking sheet and toast for 20 minutes, stirring every 5 minutes until coconut is golden. Cool on a baking sheet, stirring occasionally.

- While that's doing its thing, melt the chocolate in a small bowl. Heat on high in the microwave in 45 second intervals, stirring thoroughly to prevent scorching.

-Dip the base of each cookie into the chocolate and place on wax paper.

Set extra chocolate aside.

- Unwrap caramels and place in a large microwave-safe bowl with milk. Cook on high for 3-4 minutes, stopping to stir a few times to help the caramel melt.

- When caramel is smooth, fold in toasted coconut with a spatula.

- Using the spatula or small spoon, spread the topping on cooled cookies, using 2-3 tsp per cookie. (Reheat caramel mixture for a few second in the microwave if it gets too firm to work with.)

- Once all of the cookies have caramel topping, take the chocolate (reheat if needed) and with a spoon, drizzle chocolate over cookies making thin lines (or whatever design you see fit).

-Let the chocolate set completely before devouring. If there are any leftovers, store in an airtight container or zip-lock bag.

Makes about 3½ to 4 dozen DELICIOUS cookies!

Kennedy's Prescription Meltdown

Tonight Kennedy had a meltdown. She has been so strong over the last year. She was diagnosed with Celiac 15 months ago and that completely changed our lives. Almost a year later we are thrown another curve ball and the problem this time is that we can't just change her diet. She now has to take a lot medication and I can feel her frustration. Tonight when I tucked her into bed she started to cry and it really broke my heart. She has been so strong through all of this. She told me, "I want to throw all of my medicine away and throw myself away." There is nothing worse than seeing your child be so sad.

More Lab Tests for Kennedy

Today I took Kennedy to the lab to have a PROMETHEUS® IBD Serology 7 blood test.  It includes seven tests using five different antibody markers, giving our doctors more information to help make their diagnoses clear. PROMETHEUS IBD Serology 7 also provides more details about the possible course of IBD. 

Kennedy's Crusaders

June 6 ,2010 will be the Boise Walk to cure Crohn's & Colitis.  My goal is to have the biggest team show up for the walk to show support for Kennedy.  Our team name will be Kennedy's Crusaders.  I am going to work this next week on emailing friends and family for their support.  I refuse to sit back and let this dictate our lives.  Life is tough, but I am toughter.  We will get through this.

Ulcerative Coitits

Today we met with Kennedy's nurse practitioner to get more information on ulcerative colitis. I am overwhelmed and feeling sad.

Our immediate goal is to get her off the Prednisone ASAP. We have increased her Lialda to twice a day. Lialda can help control the symptoms of an ulcerative colitis flare and can also begin healing the lining of the colon by reducing inflammation. As long as we can get her under control with Lialda then there will be no need for immunosuppressants at this time.

The biopsy of her stomach showed some gastritis which is usually from the colon being inflamed. Kennedy will take Previcid for it and should only have to take this for 3 months.

Another thing we need to get is VSL#3. VSL#3® is the medical food probiotic with the highest available concentration of beneficial live bacteria that contains 450 billion live lactic acid bacteria, which collectively act as a Living Shield™ in the gastrointestinal (GI) tract. We ordered this today and it is a mere $120.00 a month!

At night we will give Kennedy Canasa.  It is an aminosalicylate anti-inflammatory drug. It is believed to work by blocking the production of certain natural chemicals that may cause pain and swelling.

We have another appointment in 1 month to see Barbie(our nurse practitioner). We will be praying that God will provide her with remission and us with the funds!

Trying to preserve the health of the body is so difficult to do without destroying the health of the mind!

A day filled with tears.

                                     This how I started out today. 




                          It wasn't long until it tuned out like this!

Tomorrow can't come fast enough!  I want to meet with Kennedy's medical staff and find out the treatment options.  I have racked my brain over this and I am so tired that I can't even think straight.  I know it has been said that God won't give you more than you can handle, but I am almost broken!  I need to be able to breath and sleep without this pit in my stomach.  I wish that this could all be put off onto me and Kennedy be a healthy little girl like it is suppose to be.  WHY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Kennedy has ulcerative colitis!

Got the call today that I was NOT expecting.  Biopsy results show that Kennedy has ulcerative colitis.  I am pretty sure that I didn't get half of the information that Kennedy's nurse was telling me!  I wanted to vomit!  How can one child be given so much to deal with in such a short time?  How can I be expected to get through all of this?  Why?  We have an appointment on Thursday to discuss treatment options, whatever that means. I went to the pharmacy on the way home to pick up two more medications and it was $360.00, REALLY!  UGH!

This month at Calvary Christian School is teaching the student to be healthy.  The 4th-6th grade class project was to create a poster to hang up in the school.  This is the poster that Karleigh made.  It turned out really nice.  They are also having a weekly food challenge to get the students trying new healthy foods.  Twice a week this month the 4th grade class goes around to all of the classes and lets them try the food of the day.  If the kids try it they get a raffle ticket and a chance to win jump ropes and other cool prizes.  Today was grain day and I made some homemade gluten free bread for the school to try. Karleigh and her friend Ellie went to Kennedy's class to pass it out.  They all loved it.  It was nice having her class try food that Kennedy has been eating over the last year.  Kennedy was excited to share her bread with her class.

Spending the day on the farm.

I took the girls over to a friend's, Chris Shockey, house today.  They met her two kids and spent the day on a farm.  We fed, rode and brushed Joe the horse.  Kennedy got to feed Buster the goat and we went to the chicken coop and collected eggs.  With Kevin being out of town this weekend I am pretty sure that this will wear them down and they will sleep like little babies tonight.

Crunchy Gluten Free Fried Chicken

Kennedy's First Soccer Game

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Kennedy's First Soccer Game

Kennedy had her first soccer game of the spring soccer season.  She had 4 goals and played awesome.  It was amazing to see the difference from last year.  She is full of energy and so agressive.  She has great foot skill and will make a great soccer player.

Gluten Free Chicken Enchiladas

Serves 8

1 lb. chicken breast, diced
1 medium onion, chopped
1 TBSP vegetable oil
8 gluten free tortillas
1 1/2 cups grated monterey jack cheese, divided
1/4 cup butter
1/4 cup white rice flour
1 (15 ounce) can chicken broth
1 cup sour cream
1 (4 ounce) can chopped green chilies

In fry pan, cook chicken and onion together in oil over medium-high heat until chicken is just done.

Divide cooked chicken evenly between 8 tortillas: add 1 1/2 TBSP cheese to each tortilla.

Roll enchiladas and place seam-side down in 9X13" baking dish that has been lightly sprayed with no-stick cooking spray.

Melt butter in a medium saucepan: stir in flour to make a roux; stir and cook until bubbly; gradually whisk in chicken broth then bring to a boil, stirring frequently.

Remove from heat: stir in sour cream and green chilies; pour sauce evenly over the enchiladas.

Top with remaining 3/4 cup cheese and bake at 400 degrees for 20 minutes or until cheese is melted and sauce near edges of baking dish is bubbly.

Kennedy's Endoscopy and Colonoscopy

Today we were at St. Lukes Hospital at 6:30 a.m. for Kennedy's surgery. The nurse missed her first IV so she called for another nurse to come and start the second. Kennedy was so strong and does so good with the medical challenges that she faces. After the procedure her doctor came out and was so impressed with the way that she handled the procedure at 5 years old. The endocopy didin't really show any abnormailities. There was some cobblestoning in the colon that could be colitis. We will have the biopsy test results next week.

Day of the colon prep

It is so hard reasoning with a 5 year old, especially when it comes to food.  Kennedy had to take MiraLAX and Ex-Lax to help clean her colon.  She was only able to have clear liquids today and it has been a LONG day.  We have to be at the hospital tomorrow morning at 6:30 a.m. for her colonoscopy and endoscopy.  Karleigh is staying at a friends house so we won't have to worry about getting her to school in the morning. 

Monster Cookies

Monster Cookies

1/4 cup butter, softened
3/4 cup sugar
3/4 cup brown sugar
2 eggs
1 tsp vanilla
1 cup peanut butter (I use chunky)
1 1/4 tsp baking soda
3 cups gluten free oats (I usually do 1 cup Quinoa flakes and 2 cups GF oats)
6 oz. chocolate chips or M&Ms
1 cup sunflower seeds or chopped walnuts (or some of both)

Bake at 350 degrees for 10-12 minutes.

I got this recipe from my neighbor, Liz.  Her daughter was diagnosed with Celiac Disease 2 years ago.  These are now our favorite cookies.

Jenny's Bread

1 cup white rice flour
1 cup brown rice flour
2 cups tapioca flour
1/4 cup sugar
2/3 cup powdered milk
1 1/2 T. xanthan gum
1 1/2 tsp salt
2 cups warm water
1 T. + 1 tsp yeast
1/4 cup oil or butter
2 T rice vinegar
3 eggs

Mix hard for 5 minutes. Spread into two greased bread pans. Let rise for 1/2 hour. Bake at 400 degrees for 30-35 minutes.  I have a 2 lb. bread machine and this recipe works well in it.

I got this recipe from a neighbor a couple of weeks ago.  We love it so much and I have already made three loaves.  This bread is great.

Update on Kennedy

Today I talked to Kennedy's doctor and we have decided that it is necessary to go back and do biopsies of her colon and esophagus. The stool samples have come back and they are negative for infection, which is good. The Prednisone seems to have helped some, but not as well as we would have expected. I will keep Kennedy home on Wednesday and do a colon prep. We are scheduled Thursday morning for surgery. I am glad that we are going to have answers soon. I don't know if we will ever get these medical bills paid off.

Karleigh's Last Indoor Soccer Games

So this morning we woke up to snow!!  Karleigh and Kennedy both had one outdoor soccer game each that was cancelled because of the snow.  Karleigh had two indoor soccer games and she played awesome in both games. We are finally seeing her energy levels increase.  She had two goals and they won both games.

Gluten Free Biscuits with Tuff Flour

So I tried the Teff flour.  I made my own recipe for biscuits and they turned out delicious.  I made the biscuits and then added the cream cheese/sausage middle.  They turned out great.

Ingredients

1/2 cup rice flour
1/4 cup potato starch
1/4 cup teff flur
2 tablespoons tapioca flour
1 1/2 teaspoons baking powder
1/2 teaspoon salt
1/2 teaspoon baking soda
1/2 teaspoon xanthan gum
2 tablespoons vegetable shortening (butter flavor is best)
1/2 cup buttermilk
1/2 teaspoon apple cider vinegar

Preheat oven to 350 degrees.  In a measuring cup, place 1/2 teaspoon apple cider vinegar, and add the milk to equal 1/2 cup, set aside.

In mixing bowl, add dry ingredients.

Add the 2 Tablespoons shortening and cut in until you have fine crumbs.

Add buttermilk.  Stir until combined.

Pat on board until 3/4 if of an inch thick and cut out with biscuit cutter.

Bake for 12-18 minutes.

Best Gluten Free Biscuits

So a friend brought me some Teff Flour and I had never heard of it.  So I did a little research on this new gluten free flour.

Teff's history goes back thousands of years to the ancient civilizations of Abyssinia. It was a reliable support to our ancestors basic survival.

Teff is a fine grain, about the size of a poppy seed that comes in a variety of colors, from white and red to dark brown. Teff thrives even in unpredictable and difficult climates because of it's ability withstand high heat and bright light.

Professional athletes and individuals on special diets are attracted to its delicious taste, gluten-free physiology, and nutritional advantage.

Teff grows predominantly in Ethiopia and Eritrea. As such, teff comprises the staple grain of their cuisines.

Teff is also now grown in the United States, primarily in Idaho.

Because the grains of teff are so small, the bulk of the grain consists of the bran and germ. This makes teff nutrient dense as the bran and germ are the most nutritious parts of any grain. This grain has a very high calcium content, and contains high levels of phosphorous, iron, copper, aluminum, barium, and thiamin. It is considered to have an excellent amino acid composition, with lysine levels higher than wheat or barley. Teff is high in protein, carbohydrates, and fiber. It contains no gluten so it is appropriate for those with gluten intolerance.

Teff flour is delicious in pancakes, pastries, or as a thickener in soups and gravy.

I am going to try and add Teff flour to my next recipe.

Gluten Free Wraps

Today I was at the Boise Co-op and I saw some wraps. I picked a couple of packages up because they seemed very flexible and I noticed that they were made with a whole grain Ivory Teff which is suppose to be higher in fiber. I made some breakfast burritos with the wraps and they are awesome. What a great way to start a morning.

Best Gluten Free Tortillas

Tonight I tried a new recipe for tortillas. These are by far the best.

First Sunny Weekend in March

We loaded up the bikes and headed to the Boise Greenbelt this morning. What a beautiful sunny day. Kennedy did a great job keeping up with us. We ended up riding for a little over an hour.

After our bike ride we had a picnic at Municipal Park. There was a squirrel that was begging for food.

We also walked around the Morrison Nature Center. A lot of big fish in the ponds.

The girls loved playing on the playground at Municipal Park.

Pamela's Gluten Free Scones

I tried a new recipe this morning for breakfast and the scones were great. All the recipes made with Pamela's Baking and Pancake Mix always tastes good.

2 1/4 C. Pamela's Mix

1/3 C. sugar

1 tsp. baking powder

1/2 C. raisins

4 TBSP. butter

1 large egg, beaten

2/3 C. Milk

Preheat oven to 375. Mix the dry ingredients together. Cut the butter into the dry ingredients. Add milk and egg and combine together with fork. Dough will be thick. Drop 10 large dollops of dough onto an ungreased baking sheet. Bake for 15-17 minutes.

GF Cinnamon Rolls

Dough
2 TBSP butter
1/4 C. white sugar
2/3 cup milk, warmed
1 TBSP yeast
1 large egg
1/4 cup canola oil
1/4 cup sweet rice flour
3/4 cup potato starch
3/4 cup corn starch
1/2 cup sorghum flour
1/4 tsp. baking soda
2 1/2 tsp. xanthan gum
2 tsp. baking powder
1/2 tsp. salt
1 tsp. vanilla

Filling
1 C. packed brown sugar
2 1/2 TBSP cinnamon
1/3 C. butter, softened

Icing
8 TBSP butter, softened
1 1/2 C. powdered sugar
1/4 C. cream cheese, softened
1/2 tsp vanilla
1/8 tsp. salt

1. Dissolve the yeast in a large mixing bowl with warmed milk. Let it bubble for a few minutes.
2. Add sugar, butter, oil and vanilla to milk/yeast mixture. Stir to combine.
3. Add egg and combine thoroughly.
4. Sift together dry ingredients.
5. Slowly add flour mixture to the mixing bowl and stir until well combined.
6. Remove the dough from mixing bowl and placed in a greased container and put in a warm place to let rise for 45-60 minutes. The dough will be sticky, this is normal.
7. Preheat oven to 400.
8. Roll dough to 1/4" thick 13X13 square between 2 pieces of well floured parchment paper.
9. Remove the top sheet of paper from the dough and spread softened butter on the top of dough.
10. Combine brown sugar and cinnamon and sprinkled over buttered dough surface. Leave a 2" strip uncovered at one end of square.
11. Using the bottom sheet of parchment paper as an aid, roll the dough into a log. Start at the opposite end that you left uncovered.
12. Cut into 8 equal pieces using a serrated knife. Place rolls in a greased baking dish, leaving about an inch between rolls to allow for expansion. Put any remaining cinnamon/sugar mixture in the bottom of the dish.
13. At this point you can either bake them or allow them to rise a bit longer.
14. Bake in oven for 18-22 minutes or until the tops are golden brown. Chek by running a knife between rolls in the center of the dish. Dough should not easily stick to the knife.
15. While the rolls are baking you can whip up the frosting ingredients until soft and creamy.

Gluten Free Chicken Pizza

Today we worked outside all day on the yard and before I knew it was dinner time. I came up with this meal because we didn't have any tapioca flour to make tortillas and I was too tired to run to the store. I used the Kinnikinnick Personal Size Pizza Crusts that I bought at Fred Meyers. Top pizza crust with one can of Amy's Organic Refried Black Beans. Then I topped the beans some fresh cilantro, green onions, minced garlic, chicken and mozzarella cheese. I baked at 400 for 15 minutes. I wish we would of had some salsa to put on this. Kevin put fresh lettuce on top of his and that was good.

18 Days of Prednisone

Eighteen days of being on Prednisone and Kennedy has finally had a normal stool. YEAH!! Hopefully this will continue and she won't need another biopsy!!

Finally a good Gluten Free hamburger!

Yeah!! We have found a good Gluten Free hamburger bun! Schar makes a great roll. I am excited to try the cibatta buns too.

Kennedy's Colitis

Kennedy has been on Prednisone now for 15 days and we haven't seen any improvement in her colitis. UGH!! Spoke to Barbie(Kennedy's nurse practitioner) and she wants to do another stool sample to rule out an infection. We will give Kennedy 10 more days on the Prednisone and if we have not seen any changes then we will have to go back to the hospital and do another colonoscopy and biopsies. This is all so frustrating.

Blue Mountain Exchange-Pasco, WA

February 26, 2010 was our first game. It was an 8:00 a.m. game and there was so much fog that you couldn't see the other end of the field. We played an awesome team and lost. Kennedy hung out under the blanket watching Scooby Doo.

Later that day we played our second soccer game. The sun was shining and it was 65 degrees. The girls played a good game, but we lost.

Sunday was our final soccer game it was another 8:00 a.m. game. Looked totally different today without the fog. The girls looked tired after spending two nights together in the hotel. First time staying as a team without the parents. This is a good group of girls, but I was still a nervous wreck.

Before we left for Pasco, I made lasagna and chicken noodle casserole in these tin pans. We brought the convection oven to the hotel and made our dinners right in the hotel room. We found a great restaurant in Kennewick that offers gluten free meals and next time we will give the place a try. It is called Nothing but Noodles and the food looked great.

Gluten Free Tuna Noodle Casserole

8 oz. gluten free pasta(I use Quinoa)
2 TBSP butter
1 medium onion , diced
1 teaspoon salt
1 teaspoon pepper
2 (6 ounce) cans tuna
1 TBSP cornstarch
4 ounces cream cheese
2 cups milk
1 cup peas
2 cups crushed potato chips 2 cups shredded cheese

1. Melt butter in a large skillet and saute onion until soft. Add salt and pepper.

2. Drain the water from the tuna into a small bowl. Whisk cornstarch into tuna water until smooth. Set aside.

3. Stir cream cheese into skillet and cook until melted. Add milk and reserved tuna water.

4. Stirring, bring just to a boil and remove from heat.

5. Mix in peas and tuna, separate the tuna into bite sized flakes.

6. Boil pasta for 5 minutes or until al dente. DO NOT OVER COOK!

7. Drain pasta, and rinse.

8. Toss pasta and sauce into a casserole dish and bake at 350 for 10 minutes.

9. Top with potato chips and cheese and bake for 10 minutes more.

Finally a quick breakfast idea

It is so hard cooking breakfast every morning. Cold cereal every morning is not an option. Not only do the kids get sick of it, but it doesn't seem to keep them full for very long. Today we tried Bob's Red Mill Mighty Tasty Gluten Free Hot Cereal. It was good. The girls added raisin, butter and a little brown sugar to make an excellent meal.

7 vs. 7 Soccer Tournament at BSU

Karleigh had a soccer tournament today. She played in 5 games that started at 8:00 a.m. and last game was at 2:40 p.m. It was a good day for the team with 2 wins, 2 losses and 1 tie. I think that I am just as tired as Karleigh is tonight. All of us will be going to bed early.

Gluten Free Karleigh

Today Karleigh has decided to join Kennedy and Dad in the gluten freee lifestyle. I am so proud of her. We have noticed the last few months she has not had a lot of energy and looks pale. She also hasn't grown a lot either. Her docter has diagnosed her with lichen sclerosus et atrophicus which is an autoimmune disease. This can be triggered by gluten and we are hoping that by elimanating gluten it will decrease her symptoms.

SAUSAGE ROLLS

This recipe is from Erin H. and is the 2007 Pamela's Greatest Gluten Free Recipe Contest. I made these tonight and the girls LOVED them.

1 bag Pamela's Gluten-Free Bread Mix (including the yeast packet)
1/4 C. oil
2 large eggs
Warm water(to equal 2 cups with the eggs and oil)
16 oz. ground breakfast sausage
12 oz. cream cheese at room temp. (gluten free)
cooking spray

Preheat oven to 325. Prepare the mix(including yeast pack) according to the package instruction for STAND MIXER PREPARATION. Grease 24 muffin cups with gluten-free cooking spray. Drop prepared bread dough, dividing equally, into prepared muffin cups. With oil on your fingers or the bottom of a shot glass dipped in water, press dough down and up the sides of each muffin cup. Set rolls aside to rest while preparing the filling. Approximately 20 minutes.

Brown the sausage in a roomy skillet, crumbling well while cooking. Remove from heat, DO NOT DRAIN THE SAUSAGE GREASE. Add softened cream cheese to the sausage and stir well to combine. Divide the sausage mixture equally among the muffin cups.

Bake in preheated 325 oven for 25-30 minutes until lightly brown. Cool slightly in pan, then remove.

Note: These sausage rolls may be frozen, well wrapped, for up to 3 months. Also a fun breakfast, try serving with a poached egg on top!